Living with a Chronic Illness

By: Tina Cameron

Not many people know that my two sons and I have a chronic illness that has no cure. It all began when my oldest was 9 years old. He was injured in his karate class (kicked accidentally in the head) by another kid. He was close to having a detached retina, had a black eye, busted blood vessels and spent 8 weeks wearing an eye patch. What we didn’t realize for several weeks was that this kick to his head turned out to be a blessing in disguise. He started having a “clicking” sound when he would move his head up and down or left and right. He thought it was a party trick. Little did we know that it was actually very serious. From his pediatrician’s office we were sent straight to Palmetto Health Richland for STAT CT Scans of his neck and spine. I began getting nervous as they kept coming to get him for more scans. At last, I heard my name being called and looked up and it was the radiologist with my son and tons of CT films in hand. She said Dr. Fred Piehl (pediatric orthopedic surgeon) is waiting for you now. I said, “it is 4:50, they are closing”. She replied, he is keeping the office open for you, you need to go now. I called my mom and my ex-husband and they both met us there.

As we all set in his office, I feared the worst. Corey was in the hallway and he spoke to us first and informed us what his condition was and that it could be life-threatening, and that Corey needed to be aware of it. He was diagnosed with Atlanto-Axial Instability of his Cervical 1 and 2 spine. He could turn, cough, sneeze or get in his head and it cause him to break his neck and with that he could break it and be fine, break it and become a quadriplegic instantly, or break it and it kill him instantly. We went home in shock. Everything changed, from how his bed was positioned, to never being able to play contact sports, diving in my parent’s pool, and his karate career was over. He was also home-bound from school for 9 months. He was 9 hours short of getting his black belt. He what is edsalso taught two classes of karate a week. We were sent to a neurosurgeon and neurologist as well geneticist. After our first visit to the neurologist, he said I think you all have this rare connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. He told me to look it up and then sent us immediately for lab work on another floor in his office building. Shortly after his labs were drawn and we were waiting to leave, Corey grabbed his head and said, “I don’t feel well”. He proceeded to fall out of the chair, had a Grand-Mal Seizure and quit breathing and his heart stopped. I am a nurse and at that moment, I freaked out and was only the mommy. Thank God there were two other nurses there for lab work that revived him. We were on campus of the Children’s Hospital, so we were admitted from the emergency room for the weekend. He was also having incontinence of urine and numbness/tingling in all his extremities. Seizures also go with the Ehlers-Danlos Syndrome (EDS).

Once we had the official diagnosis from the geneticist, I became obsessed with finding everything I could about it. My friends who are physicians had not seen cases in over 20 years. It can affect your heart and affects all your connective tissue in your body, it affects your skin. The type we have, type 3 is now called hEDS (hypermobile Ehlers-Danlos Syndrome). There are now 13 different type of EDS. It is a group of inherited connective tissue disorders caused by abnormalities in the structure, production and/or processing of collagen. So, we have faulty collagen. Collagen supplements do not work for us, because it is our DNA that is screwed up. Basically, the boys and I have easy bruising, easy bleeding, incisions after surgery do not stay closed and we are extremely hypermobile and have soft, stretchy skin. We are prone to multiple dislocations daily, pain all over, bruises that come from something as simple as rolling over in bed. EDSers also have multiple medicine and food allergies and Corey and I do. This condition is hereditary, so unfortunately if my children have kids, there is a 50/50 chance their kids will have it as well. The most serious type is vEDS (vascular EDS)-this is where most people do not live past 35 and they usually die unexpectedly from an aortic dissection. My older son has the most serious case of hEDS out of the three of us and I have it moderately and my youngest just has it mildly.

When Corey was growing up, he began having dislocations from changing his shirt or raising his hand in class, to hip dislocating from walking in the school halls. He went through extensive physical therapy for 3 months and to this day must work out daily. We ended up not having the rod placed in his spine and gradually the numbness and incontinence went away. His instability in his C1 C2 spine has closed some which is wonderful. He learned how to put his shoulder or hip back in place on his own to avoid trips to the ER.

My hip has dislocated once, my shoulder 3-4 times from rolling over in bed when sleeping. I am in constant pain all over almost daily. My knees are bad and slip out at times, so I have braces to wear as needed or when I run. Bruises on my body, stay about 8 weeks where on normal people, just a few days. I even get bruises from fire ant bites.

Both boys have had complete knee reconstructions, at age 16 and age 26. We know we will be facing knee and hip replacements as we age. This condition affects our eyes, our teeth, and pretty much our whole body. Most people with hEDS also have Fibromyalgia, chronic fatigue, migraines, and more.

Knowing that you have a chronic illness with no cure is a hard pill to swallow. However, I try not to let it run my life. I deal with the pain and take Advil with me everywhere. There are days, I hurt so much all over I cannot get off the couch. Many physicians have not ever heard of EDS and many do not believe the patient and think they are hypochondriacs. Family members also doubt us (not mine), but people that I have met in online support groups. We started calling ourselves Zebras because in Med School, thewhy the zebra students are taught to that when you hear hooves, think horses, not Zebras. In medicine, the term Zebra is given to a rare disease or condition. That is how we became known as medical Zebras. Because of the complex nature of our disorder, we are followed by primary care, rheumatologist, geneticist, cardiologist, physical therapist, gastroenterologist, urologists, neurologists and many more specialists as things arise. Some of the friends I have made in my support group are already on disability at 22 and 32 years of age, so I feel blessed that as of right now, my joints have tightened up, I can deal with the pain and that thank God, we do not have the vascular type. I thank God everyday that my boys otherwise are healthy and that Corey’s doing much better and is in great physical shape.

eds scoreSo, the next time you see a contortionist on America’s Got Talent, more than likely, they have Hypermobile Ehlers-Danlos Syndrome. And, if you see someone parked in a handicap space get out and they can walk (just slowly) or is young and, in a wheelchair, —do not judge. Not all disabilities are visible. Because of so many people in the medical field not knowing or even understanding EDS, awareness needs to be widespread globally. Fortunately, May is EDS Awareness month and with numerous online support groups on social media, we are getting the awareness out on what this disorder is. What we need most is for our physicians to believe our symptoms and not dismiss us, or think we are hypochondriacs. There are genetic markers for vEDS, so I am not sure why medical professionals are not believing genetic testing.

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Easy Come, Easy Go…Does Not Apply Within the Diet World!

By Marianna Boyce

I texted an accountability update to my sister before church recently.  With ten more pounds to lose, I’m still pleased with my current weight of 145 pounds.  Cindy constantly makes me laugh, so I thought I’d pass a smile onto you.  The screenshots of our conversation are quite comical, but they certainly ring true for most of us.  Her spontaneous ending remark is credited with renaming this blog post.

When Every Woman Blog published my post, “New Year…New You…No Dieting,a couple of months ago, a coworker and sweet friend shared it with others.  What Neya didn’t share was that she implemented this plan for herself.  She was a sneaky secret keeper—until she couldn’t hide it any longer.

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A few weeks into the new year, I noticed she was losing weight.  Unbeknownst to me, she was following some of the tidbits of advice I gave in my first blog post of 2019.  She chose the “My Net Diary” app instead of “Lose It.”  We are having a ton of fun on our journey so far, but when our calorie intake exceeds our limit, we agree it is detrimental to our psyche.  Nothing can be done once the choice has been made to eat the burger, fries, chocolate cake—or all three.  Other than laughing about it, our secret is moving on and making better choices the remainder of the day.

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Neya is a beautiful new mom.  After sweet baby Mason was born, she weighed in at 234 pounds.  Having lost twelve pounds since the first of the year, she currently weighs in at 222 pounds.

For every good weight loss plan, there is an exercise program to match.  Being young and vibrant, Neya is signing up for a gym membership.  I’m so proud of her for taking steps to improve her mental and physical well-being.  A healthy mama is a happy mama.

Regrettably, I approach exercise from a different angle.  In the past, I always enjoyed a challenging workout, but now shudder at the thought of it.  Rheumatoid arthritis and similar illnesses take a toll on the human body.  Exhaustion and pain typically rule the day.  My pain levels are now mostly tolerable, but I cannot subject my joints to workouts I accomplished in the past.  Since daylight savings time has ended, my plan is to simply enjoy an evening walk in my neighborhood at least three times a week.

It’s not as easy as it used to be, but I resolve losing the last ten pesky pounds one small step at at time.  Doing something is better than nothing at all.

I will update you on our journey in a future post.  Hopefully, we will be reporting positive results.  How are your health and wellness goals?  Do you need a fresh start?  There’s no shame if you do.  It’s never a “one size fits all” situation.  Simply do what’s best for you!

Refocus, rebalance, restart—because you’re worth it! 

Playing the Numbers

By: Chaunte McClure

While some of you were trying to figure out the winning numbers for the $758.7 million Powerball jackpot last month, I dreamed of what I’d do with the money if I won. Oh, I’d pay off every bill we owe, invest in a new home and other real estate and, of course, save, save, save. I never dreamed of which numbers I’d choose because of greater importance to me the numbers are displaying on my brand-spanking new wrist blood pressure monitor.

I don’t even play the lottery and I decided not to gamble with my health after being diagnosed with hypertension in July.

I went to the doctor for unrelated symptoms and as soon as the doctor walked in he asked, “What’s going on with your blood pressure?”

I had no idea. I would normally blame my high numbers on the stress of seminary, but that was two months behind me and at the time, I didn’t have much work stress.

My doctor asked me to monitor my blood pressure for 10 days, then come back and he’d decide if I need a prescription.

I hate taking medicine. I mean, really hate it.

It was easy to start my on-again, off-again relationship with morning or evening walks. I was determined to do whatever it took to get my number down, but nothing worked – at least not immediately.

I borrowed a blood pressure monitor and every time I checked, my numbers were still too high.

I recorded these numbers: 162/ 99, 141/105, 135/95, 157/107. (The optimal numbers are 120/80 or less.)

Sure, anxiety contributed to some of that because I kept thinking about a first cousin who died of a stroke less than two years ago and he was only about 35 years old. Just a few months later, one of my aunts suffered a stroke. Then I remembered Granddaddy had at least three strokes. That’s enough to send anyone into a tizzy.

I decided not to wait the ten days and go to my family doctor before the worst happens. I got an appointment within a week of my previous doctor’s visit. I was expecting exactly what I was told. After sharing my family history, the doctor said, “I’m going to put you on a blood pressure medication.”

I had to ask, “How long do you think I’ll be on the medication?”

He said, “For the rest of your life.” (Insert eyes emoji here!)

That’s not what I wanted to hear and honestly, I thought, “That’s what you think, doc.” I was about to put my faith into overdrive when the truth of the matter is I need to listen to my doctor.

If you’ve been diagnosed with high blood pressure or if your doctor has asked you to monitor your numbers, please, listen to your doctor.

High blood pressure affects your health, leading to stroke, heart attack, or kidney disease.

Get into the habit of checking your BP at home or at a local pharmacy. Your life is worth it.

Strengthening Saturday: A New Addition to My Toolbox

By: Mary Pat Baldauf

“It was great! No cleaning, no responsibilities and no guilt. Just rest and relaxation.” That’s how I described a recent overnight stay at a health facility following a vocal cord procedure to my friend/counselor/life coach, Nancy.

Recently, we talked about how I could replicate that without having to go to the hospital. Twenty minutes later, I’d devised “Strengthening Saturday,” one day each month dedicated to rest, renewal, rejuvenation and refreshment. (If only Saturday started with an R!)

Following are the terms of “Strengthening Saturday:”

  • Designate the fourth Saturday of each month as Strengthening Saturday. (That week is usually a busy one for me each month.)
  • Sleep until I wake up; maybe go back to sleep even then.
  • Have no “to do” list for that day; only do the things I want to do including, but not limited to, watching Netflix; creating something; reading; and/or catching up on my writing.  
  • Unless there is something I WANT to do outside of the house and need to be presentable, stay in my PJs or lounging clothes all day.
  • Eat foods that are low-prep and healthy. Unless I want something sinful, which I’ll totally allow during a Strengthening Saturday.
  • No social media allowed. (Lumosity and Words with Friends, yes; Facebook and Twitter, no.)
  • Tell Mom and Sister not to include me in any plans on a Strengthening Saturday.
  • Maximize my senses. Play music I love or listen to a podcast; have some flowers or other beautiful thing in my room; light a candle; take a long hot bubble bath or freshen my bed clothes; eat wonderful food; cuddle with the cats; etc.
  • Will put the guilt of not “being busy” aside, just for one day.

As I continue to grow, build and yes, even still heal a little, I think Strengthening Saturdays will be a game changer. I can’t wait for the first one!

I’ll Take the Magic Pill Please

By: Azure Stilwell

I received an e-mail today asking about the status of my next blog post. I had no idea it was that time of month again. I cannot remember anything right now…

As I mentioned in a recent blog post, I do electro-current therapy (ECT) treatments once a week and it is killing my short-term memory. I couldn’t even remember who my dentist was the other day or where our local Publix is. I go to check the mail and there are bills in the mailbox for companies I don’t remember having services with until my husband reminds me. I can’t wait for the treatments to be over. I want to be able to drive again. I want my life back. I want my memories back.

I spend every day wondering what happened to me. When did I stop laughing, smiling, finding joy in life? When did I become so depressed? I want to wake up and not have the first thing I think of be, “Is today going to be a good day?” I stopped going to church. This Easter was the first time I’ve been back to church in months. I’m trying a new church, one that I hope I will be able to get more involved in. I need something to grab onto and feel good about. This seems like a logical answer.

I am still taking my normal medications but I feel like that needs changing, too. In fact, I feel like everything needs changing. My home, my medications, my daily routine. As I mentioned in my last blog post, I want to move back home to Augusta. But when I visit, my problems seem to follow me so I know that isn’t truly the answer that I seek. I just want a magic pill that makes everything go back to the way it was before I got so sad. I hope that my next blog post (if I can remember when that is) will be about something other than mental illness, but this is what I am struggling with today so bear with me.

Are You Exhausted?

By: Shannon Boatwright

I’m exhausted. I’m so tired, it hurts. Why is this? I ask myself all the time, why does it seem that I’m always so worn out physically and mentally? It’s that time of year for me, when my world is rocked by deadlines, school requirements, performances,…some of my greatest career accomplishments tend to happen during this time of the year, so yes, I’m overwhelmed and overworked. But after so many years of feeling this way, I’m beginning to get really frustrated about it. Is it just the fact that I’m a teacher? Or is it just me? Is it because I’m an over-achiever?

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I have a terrible time sleeping. I literally cannot shut my brain off. I don’t take medication to sleep, and I probably should, but I’d really rather not! I’m sure if I could actually get good, restful sleep and a decent amount of it, I’d feel so much better! But heaven forbid I actually be able to achieve that. Most unfortunately, a good night’s sleep is totally foreign to me these days.  I live in constant fear that I’ll get sick because I know my body and mind need rest. But I’m stumped when it comes to figuring out the right formula to actually achieve this.

So I decided to do some research. A healthy living article in the Huffington Post called “How To Shut Your Brain Off When You Just Can’t Sleep,” by Shelby Freedman Harris, Psy.D. gives several tips for those of us with an overactive mind. The problem is, I’m not so sure these tips can or will work for me. For example, one of the tips is to “not worry in bed.” Yea, um, not an option for me! I’m a mother, a teacher, a wife…worry is something I will never be able to get rid of. I try not to let it rule my world, of course, but worrying is a fact of my life. The article suggests that when you can’t calm the worries that plague your mind, to get out of bed. Getting up and going to another room, doing a simple chore, etc may help someone else realize how sleepy they are and enable them to go back to bed and actually sleep, but I guarantee you that WILL NOT work for me! Not only would that wake up the pets and truly give me more to deal with, but if I get up out of bed and start doing something, my body will think it’s time to get stuff done! Sadly, that is a technique that will not work for me in my circumstances.

On a plus side, the article mentions “mental imagery.” Now this is something I do try to attempt when I can’t shut my brain off. They say there’s a reason why people say to count sheep. Something about the repetitive, soothing nature of it. I’m not a math person, so that would just aggravate me, but I do like to use visualization. So I’ll try to envision myself getting a massage or floating on a cloud, or lounging weightless in a glorious, hot tub. Sometimes I am able to actually do this and it helps me get back to sleep. Yet sometimes I work so hard trying to focus on relaxing imagery that my brain engages and leads me to other thoughts that keep me awake. Though it doesn’t always work, it’s definitely worth a try!

They say to write things down, create your to-do list so that you don’t engage in “unproductive worry.” I am a to-do list maker, something major! And, fortunately, this past year, I have found my go-to solution for helping me remember to do things. In addition to hand written to-do lists, I create alarms on my phone to remind me of things that I need to accomplish, whether it’s a simple daily task or something major. That alarm going off on my phone is my little savior at helping me not to fret about forgetting to do something on my list. And I don’t have some annoying alarm noise go off, I use a song that will make me smile or do a little dance as I’m reminded of what I need to do. My family, students and fellow teachers know that if they hear a song start randomly playing from my pocket, there must be something Shannon needs to do. It’s funny, but hey, it helps!

sleeplessI wish I had the time and energy to create an official daily wind-down, decompression time that could allow me to engage in some honest relaxation, distancing me from worries and to-do’s, but some days I don’t have the energy to make that bubble bath. Sadly, sometimes I think of a soak in a bath as more work ‘cause I’d have to prep and clean the tub and in the end, use up more time that I could’ve/should’ve just been in bed sleeping. Pathetic, I know. Ever feel like you put yourself in a position where you just can’t seem to win? Yea, me too.

There are many tips and techniques to help one get better sleep, ranging from drinking a warm glass of milk to turning off the TV and any other stimulating gadgets. I’m a firm believer that the TV should be off and the room dark and calm, but… and yes, another BUT…some days when I have had a really tough, stressful day, I need that TV on, at least for a bit. Watching something light and fluffy can help keep my mind off the stress, so that I
can indeed eventually get some sleep instead of letting the stress consume me. That’s what good stories, whether from a book, magazine, the television, etc., are wonderful for – helping us escape! I could write page after page of tips and techniques. Ha! I wish I had the time and energy to do so, but who am I kidding, my phone alarm has already been playing a Bruno Mars song repeatedly, reminding me of yet another thing I must accomplish on my fat to-do list.

So what are the techniques that work for you? After doing my research, I know that I’ve got to make more of an effort to get more exercise, create a solid routine for winding down at the end of the day and some way, somehow find more ways to simply relax. If I ever figure out the winning equation for shutting my brain off at night, I’ll definitely share. In the meantime, please do share what works for you. It might just be something that could actually help create some zzz’s for us overactive brainiacs!

Here are some links with more info on how to get better sleep.

https://www.helpguide.org/articles/sleep/how-to-sleep-better.htm

http://www.huffingtonpost.com/2014/04/23/shut-off-brain-cant-sleep_n_5161774.html

http://www.youbeauty.com/life/habits-for-better-sleep/

Not Official Until There’s a Bracelet

By: Mary Pat Baldauf

Recently, I wrote about my 2017 word of the year: Simplify. Am I complicating things by adding one more to the mix? Because while I am trying to keep my life simple, the thing I balance_every woman blogneed to work on even more is BALANCE.

As I approach the two year anniversary of my ruptured aneurysm – which I call the two year anniversary of my survival – my energy seems to be coming back in bounds. When I have a day with great energy, it’s hard not to take on too much. I can write a list of at least 50 things I need to do, but have to keep in mind that I can’t always accomplish it all in a day or a weekend. I have to prioritize with balance in mind.

Take, for instance, this coming weekend. I have supper club, a band party and church. But those are only scheduled events. I also want to cook for the week ahead, take a long walk, straighten the house (kitchen, bathroom and basement, in that order), work on my finances and get caught up on This Is Us. And, and I really need to wash clothes. What I’m learning is that I can’t do it all, even in a weekend. My energy is coming back, but I still need to rest and relax.

So I’m doing some refining of my list by way of this post:

  • Saturday evening Supper Club is a must. We’re going out, so I don’t have to clean or cook. And it’s much needed time with friends.
  • The band party is a wait-and-see. It’s an event for The Animal Mission, and a band featuring a couple of friends is playing. I don’t get to hear them play much anymore, and it’s a short set. Still, with my voice issues, clubs aren’t my best venue.
  • Church is a given. It inspires me for the week ahead, gives me a chance to see friends and gets me up and out. The service isn’t until 11:15 a.m., so I can still sleep in or get up early to get started on the cooking.
  • Cooking for the week ahead has been on my list for a few weeks now. I generally don’t do it on weeknights because I go to the gym after work, and time is already tight. For me to eat healthier, I seriously need to do this. Which means…
  • …Straightening the kitchen becomes a higher priority. There’s no way to accomplish this without at least clearing the counters, making some room in the ‘fridge and switching out the dishes. The bathroom and basement are medium priority, because I need to get a plumber out soon to work on a few projects.
  • The long walk is creating issues in my mind. I’d hoped to walk to the park and Trader Joe’s like I did before the rupture. But I don’t want to wear myself out and ruin my other plans. Maybe I can do it Sunday afternoon or evening, when it’s okay to be worn out. It might even help me sleep longer and a little better.
  • Working on my finances is easy. I can do that on my laptop in bed Saturday morning. Or even tonight.
  • This Is Us. It’s on Netflix now, and I’ve heard so many good things about it. I usually don’t turn on the TV on weeknights because it distracts me and prevents me from getting a full night of sleep. While I’m excited it’s on Netflix now, that doesn’t mean I have to watch it all on one day. This is definitely not a priority, and I may start watching (aka NOT binge watching) next week.
  • Washing clothes. A job that’s never done. I miss the days that I took everything to the dry cleaner, but my bank account doesn’t. Maybe instead of shooting for everything, I can do laundry based on priority, i.e. what I need for the week ahead.

Boom. I’ve created a simple solution for the weekend that includes plenty of balance of those things Maslow told us were important. I’ll let you know how it goes.

So what’s up with the bracelet headline? I’m a highly visual person; I like visual reminders close to keep me motivated. I have a SIMPLIFY bracelet, but need one for balance. Thus, the addition of a “new word” won’t be official until I get one. Perhaps I need to add THAT to the list.

Is your life “in balance?” What do you do to maintain a balance in your life? What do you need to work on?